Hi all, been almost 5 months and I finally got my new updated MRI version I guess,,,,,heres the deal,,,doc out till the 24th, so his nurse is working on NS referral now,,but the thing has grown (duh) went from 3 mm, to now,, 8.3 mm x 3.0 mm x 3.0 mm at c-7, all I know for now, nurse said don't cough or sneeze, great so now do I panic till my appt almost a month away?? Does ANYONE read this board?? I am sorry but I am very scared, my c-spin is in complete degeneration with massive pinched nerves, an at c-7 it's herniated as well, wt-heck am I supposed to do? Took me loosing my job, having no food going to food banks just to get the dm insurance so I could get an MRI, the ole BF turned out to be a looser from hell...anyone know what I am dealing with or have to face? I have EVERY symptom, I mean all of them!!!!!!!!!!!!!!!! Will someone please talk to me??? And yes, I posted on the facebook site also! Not one reply to date! Just need some kind of help before I go nutz here! Thanks in advance!

Hang in there until your NS appt. It usually does take a while to get in the first time. And don't panic if you have to cough or sneeze, just do it as gently as possible. We are all here for you and concerned about you. Most of us have been through similar situations. Keep us posted. Gentle hugs!

I can so relate to your situation. It took me two years to convince my doc to order an MRI of my C-spine. It showed a syrinx from C1 to the bottom of T-7, widest at the C7-T2 level where it occupied 75% of available cord space (15mm). Boy, was I scared! The MRI Tech showed me the computer screen and scrolled through the images of my neck. My doc called me that next Monday morning at 8:30 and asked if I could be at the neurosurgeon's office at noon that same day. I went, and surgery was scheduled for a week later.

But I had lived with it for 40 years. Everything turned out as it should. PFD halted the progression of my symptoms and caused the syrinx to begin to collapse. 17 Years later, I'm still kicking.

Breathe deeply, and try not to cough or sneeze.

Good luck Betty.

MaryGenetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.

Thank you for your reply, I just got a call from Dr Heiss clinic in MD and is is not in a oppertune location for me to be considered for the study..anyone know of any other studies??? I am still waiting for a NS referral. Thank you!

tennesseewalker wrote:I can so relate to your situation. It took me two years to convince my doc to order an MRI of my C-spine. It showed a syrinx from C1 to the bottom of T-7, widest at the C7-T2 level where it occupied 75% of available cord space (15mm). Boy, was I scared! The MRI Tech showed me the computer screen and scrolled through the images of my neck. My doc called me that next Monday morning at 8:30 and asked if I could be at the neurosurgeon's office at noon that same day. I went, and surgery was scheduled for a week later.

But I had lived with it for 40 years. Everything turned out as it should. PFD halted the progression of my symptoms and caused the syrinx to begin to collapse. 17 Years later, I'm still kicking.

Breathe deeply, and try not to cough or sneeze.

Good luck Betty.

Thank you for your reply; I have never had a full spinal MRI, but from the sounds of things and the other areas of pain, starting to wonder if there is not another srynx in the T region, or a few;(( nobody seems to give a hoot about us.

Just to let ya know there are alot of us out here, dealing with similar circumstances. I've lost my job, and in the process of filing for bankruptcy. Have you filed for disability?

It's a fight having this disease, and it stinks but you have to stick up for yourself! You may go to an NS that doesn't know crap and tell you nothing's wrong. I went to 3 before I was satisfied with the answers! I also had to push my doc for MRI's, and they found a slew of problems once they did. Hopefully you wont have to go through the #!?* most of us do, but if you do, were here for a shoulder to cry on!